My story is pretty much the same as a lot of AS Sufferers; I started presenting around 13, with hip, foot, and back pain, which was misdiagnosed as everything from slipping discs, to bursitis, to depression when the family physician couldn’t figure it out. 8 months after the birth of my son in 1995, I was finally diagnosed properly, at the age of 27. I was only diagnosed properly at that point because the Family Physician we had, also suffered from AS, and he referred me to a rheumatologist.
At that time, I was told to expect to be in a wheelchair by age 30. At 34, the doctors couldn’t figure out how I was able to continue walking; one doctor came from behind her desk, took my hands, and with tears in her eyes told me I was strong and a hero for being able to continue to walk, and to continue working to support my family.
In March, 2006, I was told I needed to stop working, which I did; this was the one period in which I was seriously contemplating suicide, and I owe my survival to my wife, Susan, and children, Chandler and Cheyenne. 2007 and 2008 are mostly a blur due to the heavy narcotics the doctors had me on for the pain, which never completely went away. 2007, I spent almost 7 months confined to the bedroom, and the remainder for the most part to the house. I was using a cane to walk, and occasionally two.
Over the years, I’ve tried everything the doctors have thrown at me, including experimental treatments and Enbrel, but until 2 1/2 years ago, when we began Humira therapy, my AS was non-responsive. After starting Humira, about 3 weeks in, it felt like someone had dropped amphetamines into my morning coffee, I had so much energy. I stopped using the canes, and as long as I manage my day-to-day properly, I have been able to return to work. Regardless, pain is my constant companion. Some days it’s tolerable, others it’s excruciating, but it’s always there, from the tips of my toes to the top of my head.
Unfortunately, like many who suffer from this debilitating and devastating disease, public awareness and even awareness within my extended family has been virtually non-existent, the exceptions being my wife, son, daughter, my parents, an aunt, and my father-in-law. Other relatives in my extended family have offered well wishes from time to time, but in most cases, the rest simply haven’t bothered to educate themselves, despite my putting information in front of them regularly, and haven’t cared enough to do so. I’ve been called “shiftless”, “lazy”, and the whole host of names and labels many of us have had to deal with as a result of bigotry (and it IS bigotry as a result of ignorance — would people treat other fatal disease sufferers this way?) by those who don’t understand our condition.
Sadly, as a result, my children have suffered being excluded from many things simply because some people hide their heads in the sand, or don’t understand that while I may be in a good mood, it doesn’t mean that I’m not feeling the pain that’s a constant companion in my daily life. I’ve been told that I’m “choosing” not to be involved in certain situations, simply because this disease has forced me to plan out my days, nights, and what activities I can do. I use the “pain bank” approach; if I withdraw so much activity, there’s a penalty in pain to be paid…if I deposit energy by resting, sometimes I can withdraw without penalty. Just like real banks, though, it’s a lot easier to accrue penalties than interest.
I’ve also spent a lot of time and energy working with Patient and Peer Groups, sat on the board of directors of a national organization, and worked in the Chapter office of another, and just Peer Mentored my 200th fellow patient. Unfortunately, until we as AS Sufferers and our families get involved, little traction is being gained. Groups such as Faces of AS, Ankylosing Spondylitis Awareness Project, and the World Autoimmune Arthritis Day are making a difference…but we need more of us involved. Our families need to get involved, and we need to educate people on the debilitating and disabling facets of this disease.
Own your disease, don’t let it own you; and NEVER let ANYONE make you feel guilty – including yourself – for life circumstances resulting from your Ankylosing Spondylitis. Many of us do feel guilty about the impact this has on other people in our lives, but the plain truth of it is that it is NOT our fault.
The last thing I would like to say to my fellow AS Sufferers and their families is this: keep positive, keep hope alive, and keep looking for ways to improve your situation. If something is not working today, keep the faith as best you can, as there are new studies, therapies, and treatments being developed all the time. If I made it this far, so can you.